OMG! Look what the Autism Science Foundation is up to!

http://www.prweb.com/releases/AutismScienceFoundation/IMFARgrants/prweb3581894.htm

I have been thinking about you and your family almost every day since you shared part of his story with us. I am curious about his testosterone and androgen levels. Our daughter's were elevated and we got them to the low theraoeutic range and maintain them with meds. I have heard many ASD persons enjoy success with this, especially with boys who have aggression issues. You sound so tired, and understandably so. I would pray that this would help your son. I know one form of this (re: testosterone) has been made controversial where boys are concerned but I wonder how the very rare reproductive side effect often touted with one drug can compare with every day life and for how many boys (depending on the severity of their intellectual disability) is this very rare side effect even an issue. For example, our child is, for many reasons, not a candidate for reproduction.

You all are in our prayers, as are so many parents and children on AofA.

Good luck with the IACC.

From 1995 to 2001 I fought to get the NIH to fund immune and gastro research and naturally it never happened. Also I contacted the CDC to no avail.

In 1998 I decided to fund autism research with the formation of the Autism Autoimmunity Project. We funded Vijendra Singh, Andrew Wakefield and James Oleske. In 2005 we went out of business.

I find it ironic that more time and money is spent trying to get the IACC to fund research (when we know they are like the CDC and NIH who will never fund immune and gastro research) then to fund research through independent autism organizations.

I'm just glad I'm no longer involved (with the NIH, CDC, IACC, and all the other alphabet Federal agencies) because I have been down this path and it did nothing to help our son and others like him.

Research by independent organizations into the immune and gastro issues of autism will make a difference....and nothing from Federal agencies will do it (no matter how many years are devoted to jabbing these turkeys in the ribs and no matter how many parents are involved in shaking their cages).

The Federal agencies have an agenda.....to get funded by Congress and to avoid any research that will disturb the pharmaceutical companies that look over them and work closely with them.

The Truth and Facts.

Sad and Shameful???

Yes!!!

Nevertheless, it is the Truth and Facts.

Raymond Gallup
One who has been down that sorry road from 1995 to 2001

The children with autism that I know sometimes seem like they belong in the Third World. It's incredible to think that so much suffering can be going on, affecting hundreds of thousands of American children. It's ignored. It's trivialized. Experts purposely devote themselves to research that couldn't possibly explain what's happening to our children. After so long a time of nonfeasance, the IACC can be seen only as a failure. Why should any more time or money be wasted while nothing is done to stop this disaster?

Anne Dachel
Media

Thanks to the Wrights, Becky, Wendy for speaking up for all who need it. Katie thanks a million for sharing the story of the day. Gives us hope!

When everything gets so jumbled in the day to day, thank you to you and your family for cutting through the clutter to see what is important...getting our children the help & future they deserve!

Katie - “Lots of sun exposure, good or bad for the skin?” brought a true smile to my face.

Thank you for keeping tabs on the IACC for all of us.

Now, you'll have to keep an eye on Christine McKee. Maybe she works for Banyan Communications... tee hee.

Thank you to your parents, all the board members, the scientific advisory board, etc... without them - I wouldn't have the papers & research to continually shove under my research scientists husband's nose.

Unlike Jen's husband "who does very high level antibody research, and has been involved in the biotech industry for over 20 years." I wish - wouldn't that be a fantasy come true. My husband is addicted to corroborated, peer reviewed journal articles (as anything he or his research team "proves" has to be just that) - you can only imagine our n=1 arguments re: ASD.

Anyway, my true thanks to everyone at the Autism Speaks organization/the old Cure Autism Now crew/etc. Granted, Autism Speaks is just a fraction of the scientific research out there - but they are true leaders - and are certainly true coordinators - and I appreciate so much that they make it all easily available (anyone else remember the un-navigable CAN and NAAR sites?).

Summary of abnormal biomedical findings in autism (does not include studies published in last 6 months or so)

http://www.autismcalciumchannelopathy.com/Abnormal_biomed_findings.html

http://tinyurl.com/ylkn5jw

From 2009, ten years later

J Autism Dev Disord. 2009 Oct 17. [Epub ahead of print]
Mortality in Autism: A Prospective Longitudinal Community-Based Study.

Gillberg C, Billstedt E, Sundh V, Gillberg IC.

Institute of Neuroscience and Physiology, Child and Adolescent Psychiatry, Queen Silvia's Hospital for Children and Adolescents, Gothenburg University, Kungsgatan 12, 411 18, Göteborg, Sweden, [email protected].

The purposes of the present study were to establish the mortality rate in a representative group of individuals (n = 120) born in the years 1962-1984, diagnosed with autism/atypical autism in childhood and followed up at young adult age (>/=18 years of age), and examine the risk factors and causes of death. The study group, which constituted a total population sample of children with these diagnoses, were followed up in Swedish registers. Nine (7.5%) of the 120 individuals with autism had died at the time of follow-up, a rate 5.6 times higher than expected. The mortality rate was significantly higher among the females. Associated medical disorders (including epilepsy with cognitive impairment) and accidents accounted for most of the deaths, and it was not possible to determine whether autism "per se" actually carries an increased mortality risk.

PMID: 19838782 [PubMed - as supplied by publisher]

Katie Wright never ceases to amaze me! Her articulate accounts of the issues are an amazing gift to our community. I am so thankful she is fighting for our children!

I think equally as dangerous as the CDC, NIH and the clueless doctors are these ND parents who are out there backing the scumbags like Dr. Offit, Dr. Gorski and others who have NO interest in ever getting to the bottom of autism. Talk about selling your child to the devil. I will never understand how these parents can bash all the other parents who know damn well there is a vaccine connection and biomed works well. I wish these parents nothing but misery for continuing the misery in their own kids and putting up a wall for all of our kids. Our voices MUST be heard over their's.

I've known for a long time, that passing off bowel problems and immune problems, and mito problems as a convenience factor. No one wants to explore. No one wants to PAY for the tests by insurance companies, or else it will be labeled "unproven". Perhaps the biggest problem is that we have not proven in our science of yet, that these things do exist. But if I do a simple medline search I find them? Is it that these people are too busy being political/hiding their butts? Or does it go deeper than that, that they really don't care? My thought is of the latter idea...that they don't care. Once you mention the A word to a neuro, the mind suddenly goes blank, the deer in the headlights look, or the more obvious, back to you while he types on a computer for his medical records...so as to hide the fact that maybe a tear would ensue.

When you look at kindly vets, who have seen this damage for some time, you get a hint of what is going on. I found this below, and thought to share, as it had many parallels with what we are trying to say to these committees. However, as much as I love the work and the power of our message, can we start the new focus? I mean, do these committees MATTER in the long run? I would like to propose that we do a "who is first on the moon" type of research. That being said, that we QUICKLY and ABUNDANTLY research our side of the argument, fund that with a combined effort from all NPO's, steer our focus away from such committees, and then when the science is undeniable, who can stand upon non science? When the science clearly shows these connections, and are done to the highest standards, then they will be ashamed of their positions. We must land on the moon first...

Here is what one vet said

Mr Dean says that reactions are extremely rare and then pins the blame on genetics (it’s that familiar scapegoat the breeder again). Well I happen to disagree with him. Other factors can render the chance of vaccine reaction more likely, including diet, stress, concurrent drug therapy, and the general health of a dog. This is not because I’m one of those ‘wrathful homoeopaths’ that Mr Dean so likes to snigger about, but because I’ve taken the trouble to examine the scientific evidence in the hope of keeping my remaining dogs alive beyond middle age.

One thing appears puzzling to me: how prevalent are these diseases we are urged to vaccinate our dogs against? The National Office of Animal Health doesn’t know. The Kennel Club doesn’t know. The Royal College of Veterinary Surgeons doesn’t know. The RVC doesn’t know. MAFF doesn’t know. I know they don’t know because I asked them within the last fortnight. In fact, we are being urged to weigh the risk of unquantified disease against the risk of under-quantified vaccine reactions. Another thing nobody knows: how common these reactions are. In all but one or two of the cases that have been reported to me – even when the vaccine manufacturer admitted liability – no-one sent off the Yellow Form – MLA 252(A) – to the Veterinary Medicines Directorate.

I venture to suggest that, far from being an open and shut case as Mr Dean suggests, the jury is still out on the subject of vaccination. The case hasn’t even been properly presented yet. At the present time the playing field is rather stacked in favour of the home team: most dog owners accept the advice about vaccine products from people who make money from flogging the products. The Canine Health Census is asking the consumers to speak. Unlike the veterinary profession, as represented by Mr Dean, we are actually listening. The evidence against vaccination – if you have ears to hear – is utterly damning, of which this letter is but the tip of the iceberg....

And so it goes...that vets and their dogs and cats, are getting angry too, but they have for a long, long, long time...and what of our children? Are they not human beings, with potentials, and lives to live?

It's all good and right to unite and to move mountains Tanners Dad...but we cannot move them, if they are firmly planted in the ideology that vaccines STILL have any worth. Until we release the burden of political correctness, vaccinations will continue to damage. That is the only strong advocacy I tell people now...if we boycott the whole program, then mention and argument and committees on why we feel that way will be heard. Until then...well..good luck with that...

Terrific! I needed this good news piece today. Now that he has listened and talked, I hope he can translate that into action.

Thank you so much for arranging this meeting and for giving Dr. Collins a much fuller sense of what we autism families are going through. Maybe, just maybe there will be some positive change coming to IACC!

You are a hero.

Thank God for Katie Wright! How can we support your work and follow up after this meeting? Could we each send personal letters to Dr. Collins telling our childrens stories? I want to add momentum to this great meeting. I am so full of anger with the notion of Tom Insel ending IACC meetings early "because there isn't enough to talk about", or IACC committee members skipping meetings or coming late. How dare they? I cannot tell you how thrilled I would be to see the IACC disbanded and Tom Insel publicly shamed for his ineffective leadership. How can we help?

AMEN!!! and Thank you from our hearts for all the hard work each one of you do everyday!

I went to seek a diagnosis for myself shortly after my oldest was evaluated for autism. Let's see, she was around four at that time so that means it was a decade and a half ago at least.

I remember one of the Kaiser Permanente doctors asking me about my bowel movements. Maybe it shouldn't have seemed odd to me given that my own daughter had had similar issues. But when she asked me how often I had bowel movements it seemed odd to me that she'd ask me that. What's it got to do with autism? I asked myself.

When I told her that I have typically, all of my life, had them not daily but rather about every three days, she looked interested. “You do know, don't you, that that's unusual?” I just shook my head no. She asked me if it ever bothered me, and I told her well a little bit but not really all that much. I told her that I'd never given it that much thought. She nodded her head and took down some notes, and left me with the distinct impression that this meant something.

They knew fifteen years ago. They knew it was connected with bowel problems, as well as with vaccines.

(Oh and btw, while I really hate to think of this as something that oughta be done on schedule, since I started taking the B6 my 'timetable' has been more like most peoples.)